Lessons I'm Learning From Parenting a Child on the Autism Spectrum

       It's been a long time since I've written anything new on our blog. It's not that there aren't exciting things going on, there are. Tons, actually. I see God working in so many ways that my mind can't even begin to figure out where He might be going with all of them…I do know this, however; the journey may have its ups and downs, but the destination will be something more amazing than my mind can conceive.

       The lessons I've been learning that I want to share with you today were born the evening of Chloe's 4th birthday. That was exactly one week ago today, but it's taken me awhile to get my thoughts organized. Those of you who know me know my mind doesn't work in a linear fashion - from "a" to "b" to "c" to "d"…; it works more like a cluster diagram with various thought bubbles scattered around the paper and lines going from one thought to other thoughts they trigger almost simultaneously. Together, then, they merge to form a main idea or a conclusion. But instead of working in an "if this, then this" kind of manner, my thoughts are more like a plate of tangled spaghetti; it takes me a little while to unravel each string and put them together in a "logical" manner that someone else can follow. That's how my brain works. Yeah, I know. Crazy. But, that's me. So bear with me and get a cup of coffee. This is a long blog post.

       As many of you know, Chloe was "unofficially" diagnosed with Autism Spectrum Disorder this summer. The doctor who diagnosed her is professionally qualified to do so, but it's "unofficial" because he would actually have to spend several more hours with her for the "official" diagnosis. At the end of the day, it's the same thing. Chloe has Autism Spectrum Disorder and Sensory Integration Disorder - fancy names that mean she's wired uniquely and experiences the world differently than most people. One of the things that comes along with both of these "disorders" is something called "emotional dysregulation."

       Think of it this way. Imagine experiencing all your emotions - love, happiness, compassion, anger, malice, bitterness, a sense of justice or injustice - at an extreme or hyper level. Now imagine having a diminished ability to hide them or "regulate" them. This is Chloe's experience of life (and the norm for many kids on the autism spectrum).

       On top of that, imagine that everything you experience through your senses is extreme: sights, sounds, the feel of water on your skin, the feel of wind, smells, tastes, even your internal sense that tells you how your body is feeling. Imagine if the volume of these things and your sensitivity to them were dialed up to extra high. This is Chloe's form of Sensory Integration Disorder.  How do you think you would cope with that? Well, put these things together in a 4 year old, and you've got one anxious, unstable, and volatile child.

       Unstable and volatile were exactly how I would have described Chloe on her birthday. She was "wired" from the time she woke up, but I could see it escalating even more throughout the day. She was kind of keeping a lid on it until I made the mistake of telling her about her birthday cake - which I had yet to make. Somehow, she couldn't quite grasp the - "I still have to make it" part. All she knew was she wanted her cake and she wanted it right then. I know - sounds like a spoiled little brat, doesn't it. And believe me - that's exactly how she was acting. But with Chloe, things can quickly escalate to a whole different level.

      Still, she really made an effort to be okay with waiting. She came into the kitchen with me to watch me mix the cake ingredients, but it was a little more than her already overloaded nervous system could handle. "Too loud, Mommy! "Too loud!" So, I got her headphones. That helped, and she was fascinated by the way they blocked out the sound; but she couldn't handle the feel of them over her ears. In only seconds, her poor little nervous system just whigged-out. Things went flying across the room, screams rent the air (and my eardrums). I've learned it's best if I stay calm in these situations because if I don't, it just adds to her overload and makes things exponentially worse. Still, she was uncontrollable. As terrible as this sounds, I ended up having to literally - but gently - drag her to her room; it was the only way to keep us both safe. As it was, I ended up with multiple scratches, bite marks, and bruises from being pinched. The whole day went like this, with only brief interludes of peace (in which she was extremely happy). It wasn't exactly the birthday I'd hoped for.

       At one point when I had to drag her to her room yet again, my heart just broke for her. Tears were leaking out of my eyes (I was trying to hide them from Chloe because my emotions on top of her emotions often contribute to her sensory overload). I did, however, find myself praying softly. "Oh, God. Please help me! I don't know what to do. I don't know what she needs! How do I do this?" Chloe's emotions flipped like a light switch. Her babbling (which she does when she's in distress) became words. "Oh, Mama," she said. "I know…I know…," she gently rubbed my arm to comfort me. "It's okay…The Mouse Mobile will save you." This is a quote from her favorite TV show - If you Give a Mouse a Cookie. It's her equivalent of saying, "It'll be okay, Mama."

       It won't surprise you when I tell you I was physically, emotionally, and spiritually exhausted by the time I put her to bed that night. But God wasn't done with me; He had some things He wanted me to think about.

       It started as just one thought. "The way Chloe is acting with you - her emotions out in the open all raw and exposed without the ability to hide them…that's how I see your heart, my dear daughter." Hebrew 4:12 and 13 tell us that all things are open and exposed for God to see - right down to the thoughts and intents of our hearts.

       I began to make connections. How often would I scream at God the way Chloe screams at me if I weren't an adult and able to control myself? How many times have I actually done the whole screaming thing? How often do I grumble? Grumbling is kind of the adult version of screaming - it means the same thing. "God this isn't fair! I don't like this! I don't want this! You're not being nice to me! I don't like you! I want ________________ , and I want it right now - not in 5 years!" Sounds like what Chloe was doing concerning her birthday cake, only more sophisticated. Oh, and here's my favorite Chloe-ism that she likes to throw at me when she's angry: "I don't need you,"  My response is always, "Oh? Good luck with that." Ouch. Can't you just hear God say that?
     
       Here's another connection. Chloe often wants me to "play" with her. What that really means to her is this: Come sit by me while I play. Don't mess with my toys. Don't interfere with what I am doing. Just sit here at my beck and call. Pay attention to me…see me…but let me do my thing uninterrupted - unless I want you to participate, of course, and then I'll tell you exactly what I want you to do. And you better do it exactly like I've said. Another ouch. How often do I implicitly (or explicitly) communicate that attitude to God? "I want you here, but don't mess with what I'm doing with my life. Don't mess with my plans. Don't mess with my desires. Don't mess with my toys…unless I tell you to, and then You better do it exactly like I tell you or I won't be happy with you. After all, this is my little kingdom. I know what's best, and I'm the boss."

       I began to see my daughter as a living visual aid being used by God to show me myself from His parental viewpoint; it wasn't a flattering picture. I thought, "Okay, how does my Heavenly Parent respond to me when I'm like this?"

       A series of biblical truths came to my mind followed by specific Bible verses. The first truth concerned the kindness of our God. Romans 2:4 says, "Or do you despise the riches of His goodness, forbearance, and longsuffering, not knowing that the goodness of God leads you to repentance?" The Greek word used for "goodness" here is chrestos; it always means benevolence and kindness. So, it is the kindness of God that leads us to repentance. Sometimes kindness has to be tough, but the heart of God toward His children is kindness. This is possible because His just wrath over our sin has been absorbed by Jesus! Tough and wrath aren't the same thing - and they shouldn't be the same thing coming from me to my child, either. Kindness sometimes needs to be tough - and sinful behavior (whether or not it is exacerbated by autism spectrum disorder or sensory integration disorder or emotional dysregulation) needs to be disciplined and corrected. But if I am to be the image of Christ (her living visual aid, if you will) to my child, I need to deal with her in kindness. My desire for her good and my kindness toward her will speak volumes to her - as would my wrath, anger, and frustration driven correction. Which "heart-song" do I want her to hear from me?

       The next truth God brought to mind was that we image the love of Jesus to others when we suffer willingly for their sake. In Colossians 1:24, the Apostle Paul told the believers in Colosse: "I now rejoice in my sufferings for you, and fill up in my flesh what is lacking in the afflictions of Christ, for the sake of His body, which is the church." This used to be a tricky verse for me. What could possibly be lacking in the suffering of Christ for us? What a strange thought! Nothing, of course. But Paul seems to say otherwise. What could he mean? Keeping with the context of Colossians chapter one, I believe Paul is referring to the fact that the believers in Colosse were missing one thing in connection with the suffering of Christ - seeing it and experiencing it first-hand. Paul couldn't add to their salvation experience - the sacrifice of Christ was totally sufficient to purchase their redemption - and mine. But Paul could be a living testimony both to the mercy he received from God during his own suffering and to the love of Christ that would be willing to sacrifice on their behalf. Paul was their "visual-aid" so they could see and experience this love first-hand.

       How does that connect with Chloe? First of all, because she learns from the way I go through suffering. Do I trust the grace and mercy of my Heavenly Father during suffering? Does she see me crying out to Him for help? For deliverance? For forbearance? For patience? For more trust? Or does she watch me try to rely on myself... and eventually implode on myself? Do I trust God with her or do I totally freak out as if there were no hope? Which ever one of those I do is the one she will learn from me. Second, but just as important, am I being a visual-aid for her of the love of God that is willing to sacrifice on her behalf? Am I willing to lovingly suffer for her sake despite the way she treats me? Isn't that what Christ did for me? He died for the redemption of the very people who were crucifying Him.

       This may seem strange, and I've read a lot of blogs by autistic adults who say parents should stop talking about the "sacrifices" and "how difficult it is" to raise a child on the spectrum because it hurts their self-esteem. I take issue with that on a number of levels. Every parent sacrifices for their child, and sacrifices deeply. Children are difficult to raise. Deal with it. I was difficult to raise. I'm not perfect, and I sinned against my parents plenty. Children shielded from this reality are at a disadvantage in life. Of course, I'm not talking about showing them a "woe-is-me" attitude, but let's face it - parenting is not easy. Parenting a child on the spectrum is especially not easy. We've made sacrifices. I've had to sacrifice even simple dreams - taking her to the pool and playing with her and her friends there; big and boisterous birthday parties with lots of friends and beautiful gluten and dairy-filled cake and ice cream; the ability to take her into town on errands; vacations and get-aways, and a myriad of other things. These are real sacrifices, and they are hard.

But Jesus sacrificed for me things I can't even begin to conceptualize. My loving sacrifices on Chloe's behalf place the image of Jesus before her. They fill up what is lacking in the afflictions of Christ for her. I am an everyday, living, breathing visual-aid.

        The last two biblical truths that came to my mind were intricately connected with this previous one. I don't even know which came first, they were just kind of - BOOM - there. They were these: I should have joy in the midst of my circumstances with Chloe, but joy doesn't equal lack of hardship or deep sadness. James 1:2-3 says this: "My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience…." God was basically telling me, "Julie, you need to have joy in the midst of this, because I'm actually using this to produce something good in you." Okay, I get that. I accept that. But does joy mean I can't grieve? Does it mean I can't cry? Does it mean I can't hurt? Does it mean my heart can't break? Does it mean I'm not exhausted? Does it mean I don't ask for a break? Does it mean I don't cry out to God for things to be different? Enter the final verse, Hebrews 12:2. "Looking unto Jesus, the author and finisher of our faith who for the JOY that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God." Here was God's answer to my questions. Jesus had joy. Jesus wept and grieved so deeply that He sweat drops of blood. Jesus cried out for deliverance. Jesus was in such deep agony, He asked God why He had forsaken Him - even though this was their plan from before the beginning of time. Jesus wept over Jerusalem: "Jerusalem, oh Jerusalem! How often I would have gathered you together like a mother hen gathers her chicks under her wing; but you would not!" Jesus grieved when His people would not accept his comfort. The Holy Spirit grieves when we sin. When I was growing up, I thought that meant my sin frustrated Him and made Him angry. No. The Greek word there means to grieve or to distress. My sin distresses the Holy Spirit, much like Chloe's sin distresses and grieves me (and not all her melt-downs are sin; sometimes they're just her body's way of whigging-out under too much stimulus). This is related to the kindness of God and shows His heart for His children.

       This is precious. It means I can have joy - not just in the glorious times with Chloe - and there are glorious times. But also in the distressing times when I'm crying out to God for direction and wisdom and perseverance and inner peace. It means I can have joy when I'm having to work at making a conscious decision to trust Him with me and with Chloe and with her future. It means I don't have to walk around with a fake smile pretending everything is okay when it really isn't...I can be real because joy and grief are not mutually exclusive.  And I want joy; I deeply desire the biblical perspective that breeds joy even in the midst of a horrendous day - the perspective that says though I may grieve, it is not without hope.  

       What does all this means when it is put together in my brain? It means that just as I am a visual-aid for Chloe to see Jesus, Chloe is a visual-aid for me to see myself stripped bear of any adult sophistication I think I have. She is a daily reminder that I desperately need the grace of God - not just on the level of needing His wisdom and strength to be a mom to Chloe, but also on the level of recognizing my sin is as open and laid bare to God as Chloe's is to anyone who sees her throwing a total tantrum. She is a living reminder that just as she doesn't perceive the world accurately and needs me to help her make sense of things and learn to respond appropriately, so I don't perceive this world properly. I need God's perspective to help me make sense of things and His word to teach me to respond appropriately. Chloe needs the perspective I can bring to her. But I need the perspective she brings to me as well.

       But do you know another kind of perspective she gives me? As deeply as she can feel anger and bitterness - she feels love and compassion and joy just as truly and deeply. The joy of her laughter, the purity of her compassion, the unfeigned love she lavishes on me...this is a whole other side to the lessons Chloe has for me.

       I don't know the plans God has for Chloe and for me - but He does. I don't know where this journey of parenting her is leading us - but He does. I don't know the sorrows before us - but He does. And I don't know all the joys set before me, but I know they're beyond amazing because He tells me in Romans 8:18 that the sufferings of this present time are not worthy to be compared to the glory that shall be revealed in us. And if someday Chloe comes to Jesus as her Savior (as I pray she will), then the same will be true for her. That is a great source of comfort and joy.

       Meanwhile...I will experience joy in the blessing of being Chloe's mom and of being given the honor and privilege of imaging Jesus to this precious, precious child who is so dear to my heart. It's all about perspective. Biblical perspective.